I’ve become aware that the president of the National Down Syndrome Society (NDSS) is sending out a form email to community members who have expressed concern or frustration about NDSS’s approach to healthcare legislation in Congress. The American Healthcare Act (AHCA) and the Better Care Reconciliation Act (BCRA) have both contained efforts to scale back consumer protections, as well as cut hundreds of billions of dollars from Medicaid by imposing cap and grant systems. These changes would be devastating to the disability community.

I’d like to present this form email, with my own notes and observations, shown in blue. I hope to facilitate a critical reading of what is (or isn’t) being offered in this email, as well as constructive suggestions for what NDSS could be doing in order to avert devastating harm to our community.

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As the president of the National Down Syndrome Society (NDSS), I want to personally thank you for expressing your concerns and follow up. First and foremost, I have no political affiliation. Very simply, my political party is NDSS – let me say again, my political party is NDSS and everything we do from an advocacy perspective is to fight for those in our community.

While Ms. Weir has not expressed any political affiliations publicly (to my knowledge), she is listed on the Federal Election Commission website as an individual donor to Value in Electing Women, a Republican PAC. Her donation is relatively small, but nonetheless pertinent here. More importantly, NDSS board and staff members have significant connections that could aid the community in reaching the GOP leadership behind the proposed healthcare law. In particular:

Mr. Symington’s professional history seems particularly suited to helping us. In addition to his sizeable political contributions (and hopefully connections), he is the Senior Vice President at Independent Insurance Agents & Brokers of America. I found this video in which Mr. Symington discusses the process of passing healthcare legislation with great familiarity.

Mr. Gerhardt is the President and Founder of Government Strategies Group. His bio shows quite an impressive history of working with Republican lawmakers.

Vince Randazzo, NDSS Policy Advisor, has also donated extensively to Republican causes. Mr. Randazzo’s bio also shows a long history of ties with the Republican party.

Ginny Sessions, former Grassroots Advocacy Manager, is the daughter of Republican House Representative Pete Sessions. Sessions voted yes on the AHCA bill. Sessions also has a child with Down syndrome.

Our NDSS team is working extremely hard to advocate for the Down syndrome community as we oppose those provisions of the ACA that would be detrimental to our constituents. The Affordable Care Act (ACA) passed in 2010. One could interpret Ms. Weir’s sentence to mean:

a) She is actually talking about the ACA, believes it is detrimental to the Down syndrome community, and is actually advocating for the repeal of the ACA (which would be contradictory to some action alerts);b) She actually meant AHCA or BCRA (yet she repeats this mistake); or
c) She is deliberately obfuscating the details of NDSS’s stance.

Unfortunately, we are in a very tense political environment and I understand the passion you possess on a number of issues. However, I want to make sure that I respond to you directly regarding your email and the blog post by Ms. Meriah Nichols. Ms. Nichols can question my leadership and the direction of our organization, but I am disappointed she decided to attack our advocacy staff concerning our work. These claims are mutually exclusive. Leadership and direction of the organization and the resulting work of its staff cannot be separated. Ms. Weir could theoretically be implying that she has no decision making sway over what her advocacy staff says or does, but that would be not only doubtful but of grave concern.

I have personally reached out to Ms. Nichols a number of times and invited her to come to DC, which she did not respond to those efforts. However, we did make contact about meeting in California, and I am hoping we can meet at a convenient place for both of us to discuss in her home state, or at the very least talk so we can all work together for the betterment of our community. Ms. Nichols made the emails between herself and Ms. Weir publicly available. No one has told me that they specifically named Ms. Nichols in their emails to Ms. Weir. Rather, their concern was about NDSS and healthcare.

We have been working hard on Capitol Hill meeting with key offices to express our concerns. This vague statement gives an impression of action without articulating a stance on the healthcare bills. In fact, within two hours of the Senate draft being released, I personally attended a meeting with Senator McConnell’s staffand our Kentucky advocates pushing for a healthcare bill that keeps Medicaid totally harmless. The Senate draft is 142 pages of extremely dense legislative writing. In this context, two hours is not a great deal of time. I see three possibilities:

a) NDSS knew what was in the draft bill already;
b) NDSS did not have the time to sufficiently analyze the draft bill before meeting with McConnell’s staff; or
c) NDSS was comfortable speaking to McConnell’s staff in generalities only.

The reader does not get information about the substance and outcome of that meeting, or what it means to keep Medicaid “harmless.” Let me be clear, any changes to Medicaid negatively are fiercely advocated against. Pay close attention to word choice here. This sentence leaves room for the possibility that there are some changes to Medicaid that may be acceptable. Yet the reader is not given a firm definition of “negative” change, or what might constitute “fierce” advocacy, or who might perform such advocacy, save for a single meeting with Mitch McConnell’s staff, results unstated. The reader is left with an emotional appeal: I won’t let anything bad happen to you.

We have also mobilized our Down syndrome community on several occasions by issuing “Advocacy Action Alerts” on April 14, May 4, May 10, May 30, June 15 and most recently this Sunday, June 26. Each of these action alerts details the harm that proposed changes to ACA and Medicaid would have on people in the Down syndrome community and encourages advocates to tell their story to their elected Members of Congress. I’m including these links below:

Summary: Encouraged people to contact members of the “ACA Task Force”, and specifically detailed LTSS (Long Term Supports and Services), HCBS (Home and Community Based Services), pre-existing conditions, and EHB (Essential Health Benefits).

Summary: Outlines key areas of concern for BCRA. Earlier in this email Ms. Weir reports that she met with McConnell’s staff two hours after the release of the bill. This action alert took 3 days to appear on social media and is dated 4 days from the bill’s release. The day the bill was released, NDSS posted on its social media about education instead. Still no formal stance.

Of general note: There are 7 alerts listed here, three of which are identical; that is far fewer than other legislative efforts, such as the ABLE Act.

One of our key legislative priorities is (and continues to be) ACA and Medicaid. Our team had been actively meeting with Senators and staff on Capitol Hill since the House marginally passed their version of ACA. Again, ACA passed in 2010. Again, I note the absence of any information about the content of the meetings. NDSS believes in direct advocacy and engagement with key decision makers as well as having individuals with Down syndrome and their families as part of our important discussions. There is no publicly available, substantive information regarding meetings with “key decision makers” that NDSS has had with or without self-advocates and their families. Aside from its alerts, NDSS has not posted on social media about any of its advocacy efforts concerning healthcare.

The most impactful advocacy strategy is to tell your personal story as our KY advocates did last week to Senator McConnell’s staff. NDSS wants to work with our community to help tell stories and advocate. If we work together, we can affect policy positively and much more powerfully. Working together would logically include joining with other disability groups’ efforts to fight the bill, which NDSS has not done.I want to personally invite you and your family to join me in Washington, DC for our next round of Senate meetings, following the Fourth of July recess, since the vote has been postponed. If you cannot come to Washington, we are happy to help arrange in-district meetings where myself of one of our fantastic NDSS staff members can help arrange. Even more, even if it is a phone call to a Member of Congress and/or a letter, please respond back to me and let me know how NDSS can help. At this crucial time, I want all of us to be working together.This is a blanket invitation to those expressing criticism or concern regarding NDSS policy, rather than a coordinated effort to gather community stakeholders.

NDSS will continue to meet with Senate Leadership and Congressional staff to advocate and educate them on our serious threats to individuals with Down syndrome in the current Senate ACA framework. Once again, Ms. Weir states that her concerns are about the ACA, rather than AHCA and BCRA. NDSS will make all your travel accommodations and other necessary arrangements.

Again, thank you for your tireless advocacy. I look forward to hearing from and working with you in the future!

As a backdrop to this post, I want to direct readers to the most recent NDSS financial statement. In January 2016, NDSS entered into contract for sale of its New York office condominium for $6,200,000. Down syndrome families themselves provided over half a million dollars in revenue that year to NDSS through Buddy Walk fundraising. NDSS spent $342,799 in the area of “public policy.” Surely, these kinds of financial resources would enable NDSS to plan and enact a more robust public policy effort against the AHCA and BCRA? Yet, as of this writing, I cannot find a staff position naming “public policy” at all on the NDSS website’s staff directory.

I would like to see more than a handful of action alerts and some assurances that a meeting occurred, without any information about the substance or outcome of that meeting.

WHERE CAN WE GO FROM HERE?A series of concrete steps could not only alleviate some of the Down syndrome community’s fears, but bring us closer to our common goal: preserving the future of healthcare and Medicaid for our community.

GREATER TRANSPARENCY: NDSS has claimed to have had multiple contacts with “key decision makers” in regards to the issue of healthcare. The community deserves to know the details of those meetings. Who is present? What is the message? What tangible results may come from these meetings? Sharing these details with the community can only help engender greater faith in the organization.

COLLABORATION: NDSS has not joined forces with our own National Down Syndrome Congress (NDSC), or any other disability groups on the issue of healthcare legislation. Not only do the optics of this non-collaboration look terrible, but it simply does not benefit us to have our “leading human rights” organization as a solo player at a time when strength in numbers is essential.

COLLECTING HEALTHCARE STORIES: NDSS can leverage its social media presence to boost our community’s stories, as well as teach people to share their stories locally. Some ideas: toolkits for local action that outline how to write letters and opinion pieces for local media outlets, collaborating with Congress members who are also collecting stories, and coordinating meetings with Republican Senators to meet constituent families who will directly be harmed by AHCA and BCRA.

COORDINATING RALLIES AND TOWNHALL ACTION: Physical presence is powerful, but it requires organization and planning. Rallies and townhall meetings are covered by media outlets and provide a crucial method of visibility and are very effective methods to pressure elected officials.

PUBLIC POLICY ANALYSIS: Let’s face it, healthcare is complicated. The average community member cannot write his or her elected officials with substantive comments on legislation, nor does the average person have an equivalent to NDSS’s platform. Public policy analysis is regular practice for many advocacy groups. Their paid staff members analyze policy and legislation and send letters to the appropriate political figures or bodies. Constituents can then plainly see their organization’s stance, as well as benefit from its professional analysis. Often, organizations are then invited to testify and participate in the legislative process.

WHAT HARMS ONE, HARMS ALL: I note with anxiety that Ms. Weir’s language leaves quite a bit of rhetorical room for supporting “carve outs.” Carve outs are exemptions from the cut and cap system being currently proposed. They will not work. A $772 billion dollar cut will be so devastating that no exempted group will avoid harm. This is akin to telling a family that it must now live on half the amount of money for food, but in theory, one of its children can eat as much as they need. With half the money, the family simply cannot buy enough food, period. Facing drastic cuts, states will have no choice but to scale back on optional Medicaid services such as prescription meds, therapy, home-based support and prosthetics, to name a few. If a state does not offer a service, it does not matter whether a group is exempt from the per capita cap. The service simply won’t exist. People in states with already long waiver lists will languish indefinitely. The current carve out is for medically disabled or blind children, only. Children grow up. Lastly, this method pits different parts of the disability community against each other. Who is more important? Children? Adults? Physically disabled? Intellectually disabled? Is it more important to reach more mildly disabled people, or fewer severely disabled people? You can read here and here and here about why carve outs will not work. Ask NDSS not to support carve outs.

STRONG AND CLEAR STANCE: To date, I have not seen NDSS take a clear, official position against either the AHCA or the BCRA. Repeated reference to the ACA in the above email and action alerts is confusing and risks dampening the community’s advocacy focus. Advocacy organizations regularly craft public position pieces on issues facing their communities. NDSS should do the same. A strong, clear stance can not only protect NDSS from unnecessary criticism, but also give the community a unifying rallying cry.

AHCA and BCRA might be the biggest, and worst, things to happen to the Down syndrome community in decades. Our social safety net is being unraveled at an alarming pace. Fortunately, it is not too late. It time to think critically, speak loudly, and rally together. Right now.

Let me tell you a story. While you read, I want you to be repeating this in your mind: Medicaid is inclusion. Medicaid is inclusion. Medicaid is inclusion.

The last century has been increasingly positive for people with disabilities. in 1949, the average life expectancy for a person born with Down syndrome was 12. Today, it is 60. People with Down syndrome were systematically excluded from society, with very discernible consequences. Stigmatized, lacking appropriate medical care, shut out of schools, denied meaningful work, warehoused in dangerous and often abusive institutions tangibly damages one’s chances for a long, meaningful life.

How does society attempt to rectify the stigma and prejudice that people with disabilities face? We use our collective resources to give disabled people a fair shot at living an inclusive, meaningful life. Healthcare. Education. Employment. Living at home. This is not only a financial imperative (people in institutions and experiencing health crises are expensive) but also a moral imperative (we value each other as equally worthy of participating in society).

Again: Medicaid is inclusion.

American Law and the History of Two

Judith Scott was born in 1943. She had Down syndrome, her twin sister did not. At the seven years old, deaf but never diagnosed, she was sent to live in an institution. She was thought to be “uneducable.”

In 1945, President Truman advocated for a federally funded insurance program. He did twice more, unsuccessfully. He said (emphasis mine):

“Millions of our citizens do not now have a full measure of opportunity to achieve and enjoy good health. Millions do not now have protection or security against the economic effects of sickness. The time has arrived for action to help them attain that opportunity and that protection.”

Over twenty years later, Congress passed the Social Security Amendments of 1965 by large majorities, establishing Medicaid for vulnerable populations. When he signed it, Lyndon Johnson credited Truman for being the original force behind the bill.

Judith Scott was 22 years old when Medicaid became law, 15 years into her time in an institution.

Judith Scott was 43 years old when her twin sister became her guardian and brought her home. It was 1986. I was five years old, and living in the Bay Area, where the Scotts also lived.

The Americans with Disabilities Act (ADA) passed in 1990 and signed into law by George H. W. Bush. Nine years later, the United States Supreme Court ruled in Olmstead v L.C.that states were required to support individuals with disabilities in their communities rather than in institutions.

Judith Scott lived with her sister for almost twenty years before she passed away in 2005. We lived in the town over from her. Seven years later, I gave birth to a baby with Down syndrome.

The Past Lights Our Future Path

I know about Judith Scott because after was released from government care, she went on to be a world-renowned artist. You can read about her work here.

The story of the Scott sisters made me weep, hope, and mourn. I wept for Judith, knowing that had my son been born then, he might have suffered a similar fate. I hoped that the world might one day appreciate the fruits of my son’s labors—whatever they may be—in the same way that Judith Scott’s art was appreciated. I mourned for what might have been, if only society had seen her intrinsic worthiness and included her from birth.

In 2012, the world seemed entirely different than it had been in 1943. When my son was born, I truly thought that inclusion was an attainable goal for him because of the legal protections and social safety net he had been born into.

To be clear, I want is true, lifelong inclusion. In Truman’s words, I want him to have the “full measure of opportunity” that every non-disabled child has. Full stop. That means that through appropriate supports, he would have not just a shot, but an equivalent shot to what everyone else has. (And don’t for a second think that because you are not disabled, you don’t use supports. Your supports are simply seen as de rigeur for “normal” life.)

We know that in a classroom, inclusion is better for all involved. Children with and without disabilities make better gains. We all enjoy more diversity and stronger communities.

The benefits of true classroom inclusion generalize outside the classroom as well. Medicaid, with all its flaws, is what helps gives people with disabilities that equivalent shot at an inclusive life. Medicaid dollars translate to Early Intervention, special education funding, basic and specialized medical care, home based services (to avoid institutionalization), respite hours, job training, mobility aids, communication devices, therapy. Medicaid is that extra crate to stand on in order see the game of life.

One more time: Medicaid is inclusion.

When Judith Scott was born, there was no Medicaid, no ADA, no IDEA. What life would she have lived, if she had been born 69 years later, when my son was? I think she could have had Early Intervention services and learned ASL. I think she could have gone to school with her twin sister. Stayed with her own family. Lived happier. Lived longer.

Judith Scott should have had more. Today’s Americans with disabilities should have more.

In case it needs explaining: if it hasn’t already, disability will likely touch you. It probably already has and you may not know. Valuing disabled lives, values all of us. By dismantling Medicaid, we are harming our bodies, our collective financial health, and our moral compass.

This story isn’t over. I wish that I could write it by myself, but I cannot. We humans are blessed and cursed with our capacity for collective action. 56.7 million Americans (nearly 1 in 5) are disabled. Medicaid covers 10 million elderly and disabled Americans, 33 million children, half of all births. The nonpartisan Congressional Budget Office estimates that in the next ten years, 22 million more people will lose insurance. After ten years, the numbers will grow even more.

There are 100 senators. There are millions of us. We can right this ship, if we act now.

“Doing Damns the Darkness”

(I learned that phrase from Dave Hingsburger, who spends his life and career advocating for people with disabilities.)

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Death came twice this week.
One after living many years; one after living only a few. One is carried in my children’s blood; one I’ve never met face to face. One taught me about what has been; one taught me about what could be.

A caterpillar constructs its own coffin, dissolves itself, then rises again.

I try to accept that what life shows me, I may only witness, not have.
But I have so many wants.
I wanted a great grandmother to always laugh and tell her stories.
I wanted a beloved friend to have more days with her miraculous creation.
I wanted no pain.
I may want, forever.
But that is my lament, and shows how grief makes me selfish, even as I cry for another.

Death is difficult to witness. We try to ease the struggle but cannot do the work; our people go without us for the final act, so that they may emerge into what we cannot fathom.

I have witnessed great beings, old and young. I am grateful.

Say not in grief that she is no more
but say in thankfulness that she was
A death is not the extinguishing of a light,
but the putting out of the lamp
because the dawn has come.
~Rabindranath Tagore

Image description: Two silver butterflies with tinges of blue and yellow, perched on a flower. One is smaller. Source: Wikipedia Commons